Patient and Healthcare Professional Perspectives on Short Bowel Syndrome Management and Preferred Treatment Attributes

BACKGROUND & AIMS: Short bowel syndrome (SBS) is a debilitating malabsorptive condition where patients often require life-sustaining parenteral support (PS), such as total parenteral nutrition (TPN) and intravenous (IV) hydration, to maintain health, growth, and survival. This study aimed to characterize patient and healthcare provider (HCP) experiences with current SBS management strategies and treatments and their attributes for novel SBS therapies. METHODS: A noninterventional, cross-sectional online survey was conducted in the United States (US), France, Germany, Spain, and the United Kingdom. Two complementary surveys were separately administered to adult patients with SBS dependent on PS and HCPs who manage patients with SBS dependent on PS. RESULTS: Ninety-one patients (US, n = 50; Europe, n = 41) and 336 HCPs (US, n = 123; Europe, n = 213) participated. Most patients (63.7%) used a combination of TPN and IV hydration, and ∼80% reported consistent use for > 1 year. Patients frequently reported experiencing sleep disturbances (64.6%), fatigue (53.7%), weight gain/loss (40.2%), and abdominal pain/discomfort (37.8%), while HCPs reported that their patients often experienced central line infections (59.8%) and central line pain/discomfort (43.2%) because of TPN use. Top patient-reported treatment attributes were eliminating TPN (65.6%) and/or IV hydration (50.0%) and maximizing the duration of treatment effectiveness (43.9%). HCPs emphasized decreasing the need for central venous access and its related risks (73.5%), decreasing hospitalizations and/or therapy-related complications (72.8%), and decreasing the frequency of administration (63.4%). Patients (71.4%) and HCPs (46.4%) generally preferred fewer days of TPN use per week, and one-third of participants reported that modest reductions of 1 to 2 days per week would be clinically meaningful (patients, 33.0%; HCPs, 44.3%). CONCLUSIONS: Findings from this multinational study emphasize the ongoing burden of SBS management and provide valuable insights into patients' and HCPs' treatment preferences and priorities. While patients and HCPs identified distinct but related treatment preferences (e.g., reduced lifestyle disruptions and improved clinical outcomes, respectively), both groups prioritized enteral autonomy and identified significant limitations and reduced quality of life associated with current strategies to manage and treat SBS.